Behcet's Disease

Living with a rare disease can mean years (and maybe even decades) of hospital visits, appointments, treatments, and procedures before receiving a proper diagnosis.

How long did it take for you to get your rare disease diagnosis? What has that process been like for you?

#RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome
#MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome
#morgellons #Syringomyelia #Neurosarcoidosis #Sarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

“Be gentle with yourself” is my new motto. I have been battling several autoimmune diseases for over a decade now. I was always the type of person that never stopped moving, always busy. When I started to become really ill six years ago with Behçet’s, my world was turned upside down. I could no longer do all of the things I used to do and started to feel extremely guilty. Daily mundane tasks, like cleaning, became virtually impossible for me to do.
For years, as my health declined, so did my mental health. I became depressed and I always felt like I was being judged by those around me. Being lazy was not in my nature, but I feared that others would see me as being just that.
On various occasions, I would push my body too hard and then would make myself sick for days afterwards.
Eventually, I came to realize that in order to justify my illness, I was making myself sicker.
Now, I listen to my body. When I am not feeling well, I rest. When my body tells me “no more,” I stop. I have learned that taking care of myself is essential if I want to have any semblance of a life. For those of us who are chronically ill, we have to learn that putting ourselves first is not selfish, but a necessity. So remember: be gentle with yourself and take care of you. You are worth it. ❤️

It's a no-brainer that living with a rare condition can be super challenging and frustrating at that. What about your rare condition do you find most frustrating? What do you wish people understood more about living with a rare disease?

Let me know in the comments below 💌

#RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #MightyTogether #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome
#MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome
#morgellons #Syringomyelia #Neurosarcoidosis #Sarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

When you suffer from severe autoimmune diseases and injuries, life can be difficult. It can be hard to find the positives in your days. I often find myself crying in the shower about the life I used to have and enjoy. I used to be active and I used to have a career that I loved. Now, I am pretty much housebound. I find it difficult most days to get out of bed. I have lost my friends, especially the two people that were the closest to me. It was the deepest pain I have ever felt.

One thing that I have learned through all of this is that I have to take the time to enjoy the little things in life when I can. The one season that I love the most is Summer. Why? I can sit in the shade with my three Chihuahuas and breathe the fresh air. My little fur babies are my saving graces. They offer me a lot of company.

I live on a lake in Northern Canada. In the Summer, it is beautiful here. I have about twenty Mallards who visit me every year. They know me and recognize my voice. Every year, I buy them cracked corn. They trust me so much that they will even bring their ducklings to me, It is one of the things that I look forward to.

The picture that I posted is the view from my porch. I love watching the sunset because it looks like someone has taken a paintbrush to the sky. This sunset was one of the best this summer and I consider myself lucky to have seen it.

I undergo a lot of brutal treatments for my diseases and some days, I just feel hopeless. Even though I have to use speech technology to write and have diminished vision, I can still share my personal enjoyments with others (like you). Hopefully, others will realize that no matter how hard their journeys may be, there are little things out there that can truly brighten their days. They may find that it will bring a small speck of light into their days as well. Hugs to you all. ❤️❤️